This is a quick update to let you know my test results…
My tests were all clear (yay!) My heart is functioning at 98% of the normal range. (yay) My upper abdominal innards are all excitingly healthy (liver, pancreas, gallbladder, kidneys etc) and my lung is pumping oxygen like a little trouper. Now we have the ‘well what is going on then?’ question. So I see the oncologist on the 23rd Nov and she will do tumour marker tests to see if there are signs of tumour growth (blood test) but I’m sure there is nothing sneaky going on. That’s my final word over my body.
If that’s all clear I’ll try looking at diet etc but I mainly eat Paleo so it’s not like my diet is BAD. It may be that I have a sensitivity. I don’t know. I’m grasping at straws. Sleeping 12 out of 24 hours is just plain annoying.
My GP said my fatigue is too chronic for it to be something minor like ‘over doing it’ or ‘diet’, given that he has checked thyroid, iron etc.
… back to getting the house ready for ‘open for inspection’ today. Stay tuned and thanks for your lovely comments I’m sure it’s all sounding quite boring by now and I’m blessed to have such lovely people sticking around to hear my sagas!
People have been asking me why my blog updates have disappeared. To be honest… it’s because I’ve been in ‘limbo land’. Have you ever been in that position where you know things ‘aren’t right’ but you haven’t got a diagnosis and you don’t want to seem paranoid or like a hypochondriac? No? Well apparently that’s just me ha ha.
I’ve had increasing fatigue for the past 2 months which has now got me asleep for 12 out of 24 hours. I’m also breathless and giddy at times. I KNOW… I over do it and I have the house on the market and so forth but guess what? I’ve always over done it and I’ve never lacked energy in my life. Right now my fatigue is worse than when I was on chemo. 3 months ago I was walking 40+ km a day in the heat all over Europe!
So I have dragged my reluctant self to the GP and he has done a series of blood tests. Then he heard ‘something in my lungs’ so I had a chest X-ray which is clear (YAY!). However… my liver function isn’t so good and my ECG wasn’t good either.
In the past I’ve had excellent heart test results so you might think that strange but I was told that because of my breast cancer being on the left side, the radiotherapy can damage the heart. So that’s a possibility but who knows.
Next week I have a liver CT scan and a heart stress test. Sigh. I’m sure you all know the feeling… part of me wants to find out what it is out of a need to know what’s going on but also I don’t want to seem a fraud. How silly! The other part wants it to be NOTHING. If it’s nothing why am I so sleepy and giddy? Maybe it’s love. The MOTH is pretty cute;)
I feel embarrassed to be such a medical maniac so I’ve only told my closest friends and family because they can face palm and roll their eyes at me and I can just tell them to ‘get over their bad selves’.
So… if you were wondering where my blog had gone… it went into the land of question marks. Nothing to report but hopefully I’ll know something by the end of next week. Otherwise, back to the oncologist to get more tests. Boo
On a happy note… my hair is like a giant curly frizz ball. At least I have hair and if I can con my hairdresser into straightening it I look quite ‘normal’. PLUS… I am waiting to have my breast reconstruction done. They will build me a new one out of my stomach and ‘fix’ the other one to match. I’ll be frolicking on the beach in my bikini in no time.
I know, I know… I should just be grateful that I have LIFE… and HAIR… but oh dear. This photo is the progression from short fuzz to afro curls and then the hair straightening catastrophe which resulted in it standing on end. Straightening it took my daughter forever and nothing we did would make it settle back down. Even mousse. So I went back to the curls very quickly by washing it out. I can only laugh. So far I’ve been told I look like a Granny and a baby lamb. I can’t believe how many people rub my hair to see what it feels like. I don’t blame them because I do it myself.
It’s only 4 weeks until we go to Europe for 8 weeks. I’m getting very excited about it but also apprehensive given that I have a torn tendon in my left hip. It keeps me awake most of the night with the pain but seems fine during the day. Maybe I’ll party 24/7! I am doing as much ‘Body balance’ classes and running as possible as the doctor said weak muscles cause it in the first place and it will help. Next weekend I’m running the Mothers day classic. I ran it last year without stopping and ran it in a good time WHEN I WAS ON CHEMO!! Now… well I don’t think I’ll manage to run the whole 4k as I lost fitness during surgery and radiotherapy. I can manage 2-3km on the treadmill but that’s a lot different to running on the track.
As for my RIGHT hip which has the strange ‘spot’ on it… I told the oncologist that I am going to Europe regardless of what the test says so she suggested I have the test when I return. Ignorance is bliss. So I said ‘Good idea’! I really don’t think it’s anything to worry about as it’s not getting any worse. I suspect it’s just an old war wound.
I’ll post you our itinerary once we get it all organised. I know… we’ve left it awfully late to organise but we weren’t sure if it was even going to happen. Now we are starting to panic. Whee!! I can’t wait.
I’ll return to Aus in time to have reconstructive surgery and we are also putting our house on the market. We just like to add more complexities into an already chaotic world!
What we thought was bursitis in the left hip is a torn tendon. I’ll have to stop playing so much footy. Such a saga. Today I had a cortisone shot in it so that should sort me out. As for the right hip I’ll have to wait until the 26th of May to find out. That will also be fly to Europe day! Whee!
It’s been a while and I’ve neglected the blog a little. To begin with, I’ve had a nasty hip problem keeping me awake at night. I don’t want to go on about aches and pains but I understand how concerning it is when a ‘new pain’ starts up and all the tests have to begin again. Over the past 3 weeks I’ve had bone scans, CT scans and many trips to the doctors. Monday I’m off to have an ultrasound. My GP is very sure that the left hip is bursitis and that is treatable with a shot of steroids. YAY! I’ve got bursitis! How exciting. Better than the alternative.
However… I also have a 4mm ‘spot’ on my right hip. This isn’t concerning me but I have to have another CT scan at the end of May to see if it’s grown. I can’t have an MRI because I have metal in the breast tissue expander. So on the 26th of May I find out the results. THIS IS THE DAY WE FLY TO EUROPE FOR 8 WEEKS. Doh! Seriously, I am not going to worry about every little ache and pain… or spot for the next 10 years.
Relay for life
Tonight I’m sharing my story to 2000ish people at the Greensborough ‘Relay for life’. It’s my 2nd public speaking engagement and not the last as I have another booking in May. My story seems so boring and not unusual as cancer touches so many. Hopefully I will be able to inspire people and help them to see that the big ‘C’ word can be life changing in a positive way.
I’ve decided to shun the wig. It was like wearing a woolly hat on those hot days and I almost drowned in my own perspiration. Maybe I’ll wear one on special occassions. So far two people (men) have said ‘Why aren’t you wearing your wig?’. The women all call me ‘sweety’ and pat me sympathetically on the hand. It’s quite funny to see the reactions of people I know. My Dad didn’t recognise me! The best of all was my friends son (who I have known since he was a child) who said ‘wow, I love the way you’ve cut your hair’. I was cheerfully dancing at that comment because he didn’t realize I had chemo hair. He may be a hippy but he made my day. Actually, I have to confess I’d always wanted to cut my hair really short (being an ex hippy myself) but I was worried that it would look bad and I would regret it and cry into my pillow for 100 years. So I’m trying to embrace it and so far so good. Just don’t call me sweety and pat me on the hand or I’ll have to show you just how sweet I am and get violent ha ha.
I’ve been struggling with nasty hip pain over the last 2 weeks. They tell breast cancer patients to get all new pain checked out but I have arthritis so I’d be wearing a track to the hospital if I did that. This is new hip pain is on the left side which is new, so I went to have a bone scan this week. I’m getting very little sleep from the pain. Arggh. I was all excited about bouncing around like a rabbit from here on. The problem with it is that I can’t get a massage or go to my usual chiropractor because laying on my stomach is uncomfortable with the breast tissue expander. My friend has invested in an Australian made product called ‘Mammagard‘ and I had the honour of meeting the ‘inventor’ who is an osteopath. He is selling his kits like hot cakes in the US and I feel privileged to have the use of one. I got to sleep on my stomach last night and that was awesome! So I’m hoping to get a massage and treated by my chiro/myotherapist next week. He said I can use it for my Body Balance class also but I’m not sure if I’m that co-ordinated. Soon I’ll be bouncing around like a rabbit for sure:) http://mammagard.com/
If you find laying flat uncomfortable for whatever reason (breast related) let your Physio/chiro etc know about it because they can buy a kit.
I know I’m starting to sound like a walking advertisement for products but I swear it’s just that I feel so enthusiastic when I find something great. Do you know my radiotherapy burns went from horrid, purple, infected and very very painful to remarkable healing almost overnight. I’ve been piling on the Moo Goo (also an Australian product) and it’s beginning to look better than my other skin! I told the plastic surgeon yesterday and he could hardly believe me when I said what a state I was in just 2 weeks ago. He said he would have cried if he saw it. They are very sensitive these plastic surgeons. BTW he told me I have not got enough stomach (still) to do a TRAM flap so he might have to use butt or thigh tissue. I am devastated. I’ll leave it to you to decide if I’m kidding or not.
Firstly I’d like to say thanks for the wonderful messages I’ve received from caring people. I’m so sorry that I haven’t managed to reply to you all but I really do appreciate it. So for now… this picture should say enough!